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In this section of the newsletter we will share personal stories of people with hereditary forms of colon cancer and polyps. We welcome stories regarding your experiences-positive or negative- dealing with your condition or that of a family member and effects on daily life. Many families have never had the opportunity to meet another family that has been diagnosed with FAP or PJS or HNPCC, so please use this forum to express your thoughts and feelings.
Please send any stories that you would like to share to:

From Our perspective
c/o Beatty Watts, M.S.
The University of Texas
M.D. Anderson Cancer Center
Box 243
1515 Holcombe Blvd.
Houston, TX 77030

My name is Paul. I'm 55 years old and I want to share with you why I feel very fortunate to have been one of the first persons selected for the celecoxib chemoprevention study. I had a my first colon cancer on September 30, 1994. Over the past 4 and a half years I have continued to have other polyps removed during regular endoscopic exams. I have now completed a 1 year HNPCC study but I know that regularly scheduled endoscopic exams will continue to be essential for my good health.

Just within my immediate family, my father and one brother died from colon cancer and my other brother has colon cancer as well. So HNPCC research has become very significant in my life and I think it should be of paramount importance to all of us who wish to help ourselves and possibly others. Except for regular exams, it seems sometimes there isn't much we can do to help ourselves. But through participation in the research studies we may in some small way help others and ourselves. Being a part of the celecoxib study has given me very powerful feelings of hope and selflessness. That alone is reason enough for me to participate.

Once I got past the anxiety brought on by the language in the informed consent, the study went very smoothly for me. Since I needed the endoscopic exams anyway, 4 pills a day didn't seem so bad when considering the possible positive results. I did experience mild diarrhea but no other significant side effects. Initially, I couldn't see much of a downside to the study since I could quit if I developed serious side effects, and it has been a very positive experience for me overall. As I expected, my doctors and the entire staff were always courteous, professional and attentive.

However, during the past year, I have learned that it is very important for everyone of us, and especially the medical profession, to continue to pursue legislation that will better protect the confidentiality of patients' records. Genetic links to familial illnesses and conditions have been used against some patients by their health insurance carriers. The existing laws are inadequate and are not acceptable. Your medical records and family history should be available to only your and to your physician of choice. I urge you to talk to your doctor about this and to contact your state and national legislators regarding this matter. Finally, I believe that patient counseling could be improved and I have addressed that issue with the nursing staff. Continuing contact between professional caregivers and their patients can be just as important as the support of family and friends.

Very good work is being done by researchers and there is so much more to be done. May God bless them and their work.

Paul